My Journey Through a Health Crisis (3)

Chronology

October 24, 2009 - competed in the Colorado Natural Bodybuilding Championships. My 2009 preparation for the show went well but things seemed a bit off.

January 2010 - in the latter part of the month, I recall really struggling to do cardio that normally would not have been difficult.

March 2010 - struggling to handle spinning class, problems with shortness of breath and lightheadedness during intense weight training

June 19-30 2010 - during the Maui trip I felt lethargic and often lightheaded. I also became intolerant to cold, susceptible to illness, and irritable.

July 1-2 2010 - feeling much better than I felt on our trip to Maui. I am speculating that the environment in Maui was challenging my immune system.

July 12, 2010 - my brother-in-law was admitted into the hospital due to heart attack symptoms. The doctors confirmed that he did indeed have a heart attack and other health issues requiring immediate attention. That event convinced me that it was time to see a doctor myself.

July 15, 2010 - initial visit to family doctor. My doctor found signs of anemia and ordered extensive blood tests.

July 16, 2010 - paid a visit to Quest Diagnostics after an all night fast. I think they took somewhere between 8-10 vials of blood.

July 17, 2010 - I worked out hard in the morning and the got ready to see a movie with Jordan. I showered, took off a CIY wrist band and put on my LiveStrong wrist band. Within two minutes a doctor associated with the lab called and told me I had a very concerning blood test. He asked me how I was feeling, if I felt feverish, or if I had been having problems with bleeding. I replied that I had not. He said that I should rest over the weekend and go to the emergency room if I had any unusual symptoms. He also mentioned that my red blood cell, white blood cell, and platelet counts were all very low.

July 19, 2010 - I got a phone call from my doctor and he explained the possibilities. Most of the possibilities were very frightening. He arranged an appointment with an oncologist immediately.

July 20, 2010 - met with an oncologist, had 10-12 more vials of blood taken, and a bone marrow sample taken. The diagnosis is beginning to look like aplastic anemia, myelodysplastic syndrome, and various forms of leukemia including acute myeloid leukemia; each of these represents a significant risk to my life and will more than likely requires a bone marrow transplant.

July 22, 2010 - probably one of the most miserable days of my life. My doctor told me he would call as soon as he got information regarding my bone marrow test. He didn't call so all sorts of things went through my mind. I wondered if he had really bad news that he needed to tell me face to face. I had spent quite a bit of time researching things and that only made matters worse. I never received a call. I was deeply troubled, very sad, and afraid. I read Psalm 20 several times and prayed. The next day I spoke to a good friend named Andy. Andy listened to what I had to say about the experience. He came back later and said, it reminds me of what Jesus experienced in the Garden of Gethsemane.

‎"Father, if you are willing, take this cup from me; yet not my will, but yours be done." An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.

I remember thinking those same thoughts. God if there is any other way, please take this from me. If not, please give me the strength to endure whatever comes in a manner that honors you and is an example of how one ought to endure difficult trials.

July 23, 2010 -my oncologist tells me that all indications are that I have myelodysplastic syndrome. He educated me on the disease and talked about how we would know how advanced the disease was and how it is categorized. He also talked to me about an article he read in the New Yorker. The article was about people with terminal illnesses that continue treatment when there is no hope. I wasn't exactly clear what message he was trying to send me. I decided that he must have been trying to help me understand the possibilities and prepare myself and my family for the worst case scenarios. I had blood drawn and it was determined that I was severely anemic and required a blood transfusion. My hemoglobin measurement was 6.5 where a normal male my age would have a value between 14 and 18. I was sent to the hospital for typing.

July 24, 2010 - I spent 5 hours in a hospital getting the first blood transfusion of my life. It is my son's birthday and I am really missing being with him. He bought me an excellent book to read and got me some dark chocolate raisinettes to eat. During the 5 hour procedure I read, slept, wrote in my journal, conversed with the nursing staff, and reflected. I recall looking up at the pouch of B- blood dripping into my IV. I was so incredibly thankful for the person who was willing to donate blood to help people like me. I was also convinced that I had to do something to help people suffering from diseases like MDS and Leukemia. I began thinking that I would love to arrange a drive to get people to give blood and be marrow donors on the national registry. I also had a daydream. In my daydream I envisioned myself alone standing in front of an enormous dragon. In my dream I knew I had no hope of winning. I also knew that this wasn't the whole story. My daydream continued and legions of people joined me. Among them were family members, friends, doctors, nurses, anonymous donors, and God. I had an army and with that army I knew I could win the fight. Maybe this sounds odd, but contemplating this brought tears to my eyes. At times throughout the day nurses checked on me and talked with me. By the end of the day I felt like I had made two friends. Both of the nurses said that they would be happy to donate marrow if I needed it.

You know there are times when I wonder, 'where are the good people in this world?' Now I know that they are all around me.

July 29, 2010 - my oncologist calls and leaves a message confirming the diagnosis of myelodysplastic syndrome based on genetics results. He tells me to expect a call from another doctor who specializes in bone marrow transplants. We didn't receive any other calls that day.

July 30, 2010 - my oncologist discusses the disease and explains the likely treatment. I have more blood drawn and the results indicate that I do not need another blood transfusion (hemoglobin at 8.8). I do not receive a phone call from the bone marrow transplant doctors office so I call them myself. No appointment scheduled.

August 2, 2010 - I do not hear about an appointment so I call my oncologist's office. They do what they can to move the process along. Late in the day I finally get a call but I am not scheduled for an appointment.

August 3, 2010 -I finally received a call and an appointment is made for August 11th. You may be reading this and asking, 'why are you telling me all this detail about arranging an appointment with the transplant doctor?' Well it is very simple. The disease I have, myelodysplastic syndrome, can develop into a dangerous form of leukemia known as acute myeloid leukemia. My desire is to move quickly and stay ahead of the disease. The other thing that I want to communicate is the importance of doctors, nurses and staff doing what they say they are going to do. Overall I have been very happy with the care I have received. However, the moments I have suffered the most have correlated to unmet expectations.

August 11, 2010 - I had a three hour appointment with the bone marrow specialist. I was very impressed with the doctor and his staff. I was thoroughly briefed on the disease, treatment, schedule, and the resources available to me and my family. We came to the appointment equipped with the necessary information to send test kits to my siblings -- we didn't want any further delay in getting a donor identified. The test kit essentially is a set of instructions and three vials containing heparin for blood samples.

We also learned that the donor DOES NOT have to have bone marrow taken from their hip. Instead, the donor is given shots that produce the necessary stem cells in abundant quantity. After four days (the donor can continue to work), they can take blood, remove the stem cells, and give them to me intravenously. That sure sounds better to me.

I also understood that they will begin a search for a match on the national bone marrow donor registry as soon as possible.

Last but not least, I was told that I will begin chemotherapy immediately. The chemotherapy drug that I will be given has virtually no side affects in most patients. The product is called Vidaza. Here is an article that explains this drug.

http://www.medicalnewstoday.com/articles/139483.php

August 20, 2010 - I saw my oncologist today and we discussed beginning chemotherapy next week. He would like for me to come in for 7 straight days and receive shots. He prescribed some medicine to help me manage nausea because nausea is a known side effect of Vidaza. Another member of his staff discussed the drug in more detail. She said that most people handle the drug very well. The down side of Vidaza is that initially my blood counts will drop and then hopefully rebound. Given that my counts are already very low, that can be a significant issue. We will have to be very diligent about keeping the house clean and avoiding contact with sick people.

[this post will be updated]